Saturday, February 24, 2007

This is a description of one of Leo Kanner's autistic "patients", from a follow-up study Kanner published in 1956 with his colleague Leon Eisenberg. This paper is reprinted in Kanner's 1973 book.

Jay S., now almost 15 years old, presented in the lower grades considerable difficulties to his teachers, who were exceptionally understanding and accepting. He wandered about the classroom, masturbated openly, and staged temper tantrums. He learned to conform, did phenomenally well in mathematics, was sent to an accelerated school, and is now finishing the eleventh grade with top marks. He is a peculiar child, rather obese, who spends his spare time collecting maps and postage stamps and has little more to do with people than is absolutely necessary for the maintenance of a superficial relationship. He achieved a Binet IQ of not less than 150.

18 comments:

Thanks for posting this. When I read the paper by Kanner, I could not help but be amazed by the potential shown by those kids. What is very hurtful is to realize that almost all were confined to institutions, despite the evident promise that we would recognize today.

And BTW, I think that the "90% of autistic people will wind up in institutions" argument may be based on the Kanner paper.

The 90% figure doesn't come from any Kanner paper that I've read, and I've read a few, including one short paper entirely about the institutionalization of children (autism is not mentioned in this 1965 article).

Kanner did write about how institutionalization destroys autistics (destroys their abilities, drastically lowers their IQs, etc.), including several of his original 11.

Two did comparably well (cases 1 and 2), and another was placed on a farm, and was still mute (case 7). But of these, only Donald T. (case 1) was independently employed. Frederick W. (case 2) was employed in a sheltered workshop. Kanner lost track of two children. The others (six children), I think would be considered "institutionalized" by most people.

So, I think that it might be argued that it was found that only one of the 11 original children was not placed "in institutionsand residential facilities", and 1/11 is just under 10%.

I am not saying that Kanner claimed that "90% of afflicted individuals" (will be) "placed in institutionsand residential facilities", just that one interpretation of that article might be consistent with the Deskin/Kavchak "fact sheet".

Frederick W. was competitively employed, full time, and was definitely not in an institution.

Herbert B. was not competitively employed, but was definitely not in an institution.

There was also some uncertainty about the outcome of more than one child (e.g., Alfred L., Paul G.)

If not being employed in a particular way (as in, not like Frederick W., who was highly praised by his boss in the National Air Pollution Administration--not a sheltered workshop), and living with and being dependent on other people in some ways, is being "institutionalized", then a big chunk of the Canadian adult population is "institutionalized".

Even with such cases you have researchers like Dr. Szatmari who proclaim that autism has the worst outcome of all neurological disorders (which I assume includes disorders that kill you). That's in spite of Dr. Szatmari's own research. Why that might be is something I find difficult to fathom.

Thanks Michelle. Can you suggest another origin for the 90% institutionalized "factoid"? Nothing I have ever read has suggested such a high institutionalization rate. If even the original Kanner work, done at a time when institutionalization was much more common, cannot support that claim, then I guess it must have been completely fabricated.

The major autism behaviour analysts, Ivar Lovaas and Tristram Smith, could not come up with an institutionalization figure higher than 74%, but also twice gave the highest figure as 40%. These were claimed as figures from the 1960s. The figures Drs Lovaas and Smith give for 1980 (27 years ago...) are 7% to 8%. All the figures are for the specific diagnosis of autism.

You can see these figures in in point 36 here. Sources, notes, references at the end of the article.

My guess is that the 90% figure comes from the Auton trial decision. However, there was no peer-reviewed paper in evidence in Auton reporting data that could justify this figure.

When autism advocates (e.g., FEAT) have referenced the 90% figure, they have used Auton as the reference.

Autism advocates have also referenced Auton to claim that 63 of 64 autistics who do not receive ABA/IBI from early in life just naturally belong in institutions. This is the kind of grossly anti-scientific (no relationship with the published science) and unethical statement that has become the hallmark of autism advocacy in Canada.

Are you familiar with this? It's an interesting challenge to the usual manner "outcome" is measured. It looks at 4 case studies, argues that all 4 have had a good outcome (despite having a poor outcome as formally defined in prior literature), and finds that family advocacy is a predictor of good outcome.

Re: the 90% figure. A collegue of mine did his best to source it and came to the conclusion that it was first thrown around in a letter to the editor in the Globe and Mail in October 2002-I think this is it: http://www.uoguelph.ca/oaar/G&M-editorial-2002-Oct-17.html

Thanks for that link, but the 90% figure was in the Auton trial decision, which was handed down in 2000. The G & M article simply parrots this figure (and other immortal passges from that decision), along with the equally false 1 in 64 figure (where the source can be named, but is grossly misrepresented).

"If not being employed in a particular way (as in, not like Frederick W., who was highly praised by his boss in the National Air Pollution Administration--not a sheltered workshop), and living with and being dependent on other people in some ways, is being "institutionalized", then a big chunk of the Canadian adult population is "institutionalized"."

As far as the likes of Lewin, Vygotsky, Järvilehto and Kelly are concerned (theory-wise) that is a pretty accurate analysis.